Catalonia will be pioneer in Europe in the inclusion of the newborn screening of the SCID!
16th September 2016
On September 16th the Health Minister of Catalonia announced at a press conference the incorporation into the newborn screening in Catalonia of the most severe form of PID, the severe combined immunodeficiency (SCID) by January 2017, ranking Catalonia as pioneer in Europe in including this program for all newborns.
The presentation ceremony was also attended by Dr. Pere Soler, head of the Pediatric Infectious Diseases and Immunodeficiencies Unit, Hospital Universitari Vall d'Hebron and president of the BCN PID Foundation.
The Jeffrey Modell Foundation recognizes Hospital Universitari Vall d'Hebron as a "Center of Excellence in PID" 20th September 2016
The re-known American foundation Jeffrey Modell Foundation has awarded Hospital Universitary Vall d’Hebron the recognition of "Diagnostic and Research Center for PID, Jeffrey Modell Foundation”. Dr. Pere Soler, head of the UPIIP, will be the director of this new and first center in Spain.
The event was attended by Vicki and Fred Modell, the Hospital general manager, all the professionals who are dedicated to the care of patients with PID at HUVH, representatives of the pharmaceutical company Grifols and patients with PID.
After the inauguration act they all visited the facilities dedicated to the care of pediatric patients with PID and left messages and wishes in the “Appreciation garden” that children with PID had prepared as a surprise to Vicki and Fred.
From 21st to 24th September Barcelona hosted one of the most important congress on PID, the ESID, which in its 17th edition had more than 2400 participants. The attendees enjoyed the conferences of well-known PID experts worldwide as Drs. A. Cant, C. Klein or JL. Casanova, among many others. During the congress, Marina Garcia, biologist of the VHIR, won the award for best photography and was awarded to attend the next edition of ESID 2017 in Edinburgh.
Our foundation had an important role in this edition by offering three travel grants of 1000€ for juniors to attend the congress, and by sponsoring the first race for PID in support of the newborn screening of SCID with more than 100 runners under the motto " Run for PID Awareness".
This conference culminated a week that has been key in the world of PID.
Solidarity concert for PID 6th August 2016
On August 6th the New York artist Monica Green was the star of the inaugural concert of solidarity in “Les Nits de Marimurtra” in bnefit of the BCN PID Foundation. The singer with her powerful voice and accompanied by the great pianist Frederic Wort made vibrate the gardens of Marimurtra.
OTHER NEWS... NON-STOP
CHARITY DINNERS FOR PID
On September 4th and October 6th we held charity dinners in two well-known restaurants in Castelldefels, Barcelona, to raise funds for PID. The events were a success with more than 200 attendees who enjoyed live music and a charity raffle of products donated by several companies.
EXHIBITION OF THE 2ND INTERNATIONAL FESTIVAL OF PEDIATRIC PATIENTS’ PAINTINGS 2016
This year we have participated together with the Hospital Universitary Vall d’Hebron at the 2nd International Festival of Pediatric Patients’ Painting. We have sent a total of 15 drawings and some have been selected within the top 32. The drawings are exhibited in the halls of the UPIIP clinics at Hospital Universitary Vall d'Hebron.
“COLORED BUBBLES” IN MEDIA
We've almost reached 100,000 video views of the videoclip "Colored Bubbles." During these months the campaign has been echoed in different media: Catalunya Ràdio; El matí de Ràdio 4; Diari musical Enderrok ; Rac 1
HAPPY BIRTHDAY BCN PID FOUNDATION!!
On July 22nd we celebrated our 2nd anniversary. In these two years we have established as a reference entity in PID in our country, signing agreements with important institutions and foundations. We’ve worked to provide a better health care to patients with PID and their families, raised funds for research in PID, encouraged the formation of health professionals creating grants for young researchers and organized awareness campaigns such as dinners, concerts and charity fairs.
Here's a collage with a collection of the best images
GET VACCINATED AGAINST FLU!
The influenza vaccination campaign has started and the professionals who care for patients with PID must give full support and be the first ones to get vaccinated. If you are a patient at risk or either treat or live with someone with PID you should be vaccinated.
Getting vaccinated protects!
This autumn we’ve put music to PID by adding great music bands in our struggle as La Pegatina, La Raíz, Che Sudaka or Aspencat among others. We have also added new pieces as the actor Pep Molina, the artist Tortell Poltrona or the priest Pare Manel.
A VIDEO TO STRUGGLE FOR PID
BCN PID Foundation
Collaborate with the Vall d'Hebron Hospital and the Barcelona PID Foundation to struggle for children with PID. Each videoview of Boxets' videoclip "Bombolles de colors" (Colored Bubbles) will mean 1€ for research into these rare diseases.
This September the Acadip organized its annual visit for children with PID to the amusement park Tibidabo.
More info: www.acadip.org
RAPID, the new program to promote early diagnosis and treatment of IDCG! Created jointly by the Vall d'Hebron Hospital and the Blood and Tissue Bank to accelerate the diagnosis and treatment of IDCG. More info
Learn more about the new association for patients with PID of Andalucía.
More info: www.anadip.org
TRAINING AND RESEARCH
IEWP AUTUMN MEETING 4th to 6th November 2016 - Ghent, Belgium
The 2016 Inborn Errors Working Party meeting held at Ghent, Belgium will provide an excellent setting for another essential, educational and enjoyable IEWP meeting. More info
ESID 18th BIENNIAL MEETING 11th to 14th September 2017 – Edimburgh
The Meeting of the European Society for Immunodeficiencies (ESID 2017) is now going annual! In 2017, ESID will be in Edinburgh focusing on the theme of Autoimmunity & Inflammation in PID; Beyond the Paradox. More info